In July the government will publish guidance on advance care planning. Jennifer Taylor finds out how you can give patients approaching the end of life the care they want

Advance care planning is about patients expressing their wishes and preferences about their future care, such as a choice to die at home. It can also include, but does not have to, advance decisions to refuse treatment.

While voluntary, planning ahead will increase the chances of patients’ wishes being met. To encourage that thought process, the Department of Health will publish a guide for patients in July - Planning for Your Future Care - which sets out the types of questions that people who are approaching the end of their life may wish to consider. It advises patients to discuss these issues with a health professional.

“Less than one in three people (31 per cent) have discussed how they would want to be cared for at the end of their life with friends/family/loved ones”

So how can managers and clinical leaders make advance care planning a successful part of their service?

The first step is having processes to identify people who may be approaching the end of life.

“There is a lot of work going on at the moment in identifying in different disease areas what the triggers are that should encourage people to have these conversations,” says national cancer director Mike Richards.

He adds that, for any disease, clinicians can ask themselves the “surprise question”, which is: “Would you be surprised if the patient in front of you was to die within the next year?” If the answer is no, it might be a good time to have the conversation about preferences for care.

Clinicians and patients find the preferred priorities for care tool helpful. It is available on the National End of Life Care programme website.

But it is not a one-off process, says Professor Richards. “People’s needs do change, their priorities change, and so they have got to know that’s fine and that these conversations can be held on a regular basis.”

The discussions can be difficult for patients and staff so training is essential.

Tracy Reed, a district nurse at West Essex primary care trust, took a PCT-run course in advanced communication skills, plus a basic introduction to preferred priorities for care (see case study).

Good communication

The National End of Life Care Programme is modifying courses in communication skills for cancer clinicians so they can be used by a much broader range of people. There will be advanced courses for senior clinicians, plus intermediate and beginner courses for non-specialist nurses, receptionists, and so on.

Plenty of guidance is available. The National End of Life Care programme has published Advance Care Planning: a guide for health and social care staff, and Advance Decisions to Refuse Treatment: a guide for health and social care staff, the website for which also has a section devoted to training.

Guidelines for doctors were published in February 2009 by the Royal College of Physicians, and the General Medical Council is consulting on draft guidance for doctors on end of life treatment and care.

It is patients’ responsibility to make their wishes known, but professionals should have systems in place for transferring the information. According to Sheila Joseph, national programme manager for the National End of Life Care programme, some GPs have a process for sharing the information with the out of hours service.

Documentary evidence

In the East Midlands, consultant physician and community geriatrician Ben Lobo, who is medical director of Derbyshire Community Health Service and national clinical lead for advance decisions to refuse treatment, helped set up a process for registering end of life decisions with the ambulance service.

Ms Reed advises patients to take the document with them if they go to hospital and she sometimes phones hospitals to say the document exists.

Some patients may wish not to have a preferred priorities for care plan, but Ms Reed says that in those cases introducing the document can still prompt a conversation.

She adds: “Most people are really receptive because you’re giving them something back, you’re giving them a choice, and also opening up communication with their families because there are some families who don’t actually talk to each other.”

Top tips

  • Identify patients approaching the end of life
  • Give patients the DH guide Planning for Your Future Care
  • Use the Preferred Priorities for Care tool to prompt a conversation
  • Review patients’ priorities on a regular basis
  • Train staff in communication skills
  • Consult current guidance
  • Set up systems for communicating patients’ wishes between treatment settings

Case study: the importance of preferred priorities for care

Two years ago Peter Cranfield’s wife Pauline was diagnosed with carcinoma with unknown primary.

At Pauline’s six monthly CT scan in November she asked for a head scan, which showed that the cancer had spread to the brain. She began to go downhill after the subsequent radiation treatment.

A Macmillan nurse had given Peter a Preferred Priorities for Care form, but he says: “I first thought it was a bit of NHS bureaucracy so I shoved it in a drawer.”

Tracy Reed, a district nurse at West Essex primary care trust, says it became clear that Pauline was going to die in a few months time and offered to fill the form in.

Peter admits that if it had been left to him, the PPC would still be in the drawer. From then on, it was kept on the sideboard so that all the doctors and nurses knew Pauline’s wishes.

“I could see that it was giving her peace of mind,” he says.

Pauline died from a brain seizure in February, aged 59. Peter says: “For my wife and me that care plan was perfect because we could say what we wanted. When she died, with me holding her, I knew that there was no way I was going to phone for an ambulance because that’s not what she wanted.”

Find out more

National End of Life Care Programme

Advance Care Planning: A Guide for Health and Social Care Staff,

Advance Decisions to Refuse Treatment: A Guide for Health and Social Care Staff

Royal College of Physicians guidelines

General Medical Council is consultation on draft guidance for doctors